ONCE IN DREAMS

From a dream, soft and tender, she awakes
To the harsh, bitter opening of the day
Feels its icy-cold breath on her neck
And clutches the covers close to her chest

In the realm of the dream, she would prefer to remain
But her body betrays her, and she protests in vain
No lingering in safety, reclaiming moments long-past
For time marches ever onward – forward, not back

She crawls begrudgingly out of her bed
Knowing all too well the misery that lies ahead
She is alone, as these days is most always the case
In isolation, disaffection, her demons she must face

Passes portraits, sweet smiles, as she treads lightly down the hall
But her laughter is missing, unlike the woman on the wall
Carefree snapshots of one she once thought she knew
Shuts her eyes, bites her lip; she is just passing through

Catches glimpses in the mirror of a soul frail and old
This spectre, this shadow, who will never be whole
The best laid plans, off the rails, it would seem
Ravaged by circumstance, victim of fate’s foul schemes

Nearly grasps, almost reaches, vaguely recalls
The woman she once was, prior to her fall
She was fresh and full of hope, passion, and fire
A force to be reckoned with, a spirit to admire

Now saddled and tamed, she relives and regrets
Retraces, to no avail, her missed paths and missteps
She harbors a hole in her heart that won’t heal
Struggles to stay present – some days, to simply feel

Her thoughts never cease to remind her of her pain
Of all she has lost and how little remains
She clings to the remnants as if they were gold
But she finds herself slipping, nothing left to hold

The memories are dreadful; they punish and wound
They rip and they shred; they refuse to soothe
She is trapped in a loop, cannot scale the walls
Confined to her cell, to a prison lacking bars

She longs for serenity, for long-lasting peace
For stability, security, and a sense of relief
She yearns for the normal, for one more good day
But her hope for that future is fading, wasting away

She believes in her Maker, knows something better lies ahead
But she stumbles, lacks wisdom, and sometimes doubts instead
Seeking meaning in this life, her nagging questions persist
Trusts the future, but until then… how does she exist?

She drags through the hours, weary and spent
Endeavors to understand this cruel hand she’s been dealt
She flounders and fumbles and tries hard to resist
The notion it’s for nothing, that something’s seriously amiss

She does what she can to ease the suffering of others
But whether it matters at all, she often wonders
Is she making a difference? Are her efforts well-received?
Has she learned all the lessons? Is her Author well-pleased?

By the end of the day, she has no more left to give
And only hopes that her failings all might forgive
Lies back down in the embrace of her warm open bed
And once again invites the dreams that still live in her head

This Is GP

It is physical agony beyond compare.  It is days and nights spent on the bathroom floor, crying, pleading for someone to make the crippling pain, nausea, and vomiting stop.  It is being too exhausted to focus, too drained to complete chores, and too weak to climb up the stairs to your bedroom.  It is hungering for food, relief, a moment’s peace.  It is praying for an end to the never-ceasing torment while knowing in your heart you will face it again tomorrow.  

It is frustration and anger.  It is watching others eat, work, and play, and wondering why they were blessed with such normalcy while you are fated to be ill.  It is seeking independence but knowing you must now rely on others to perform basic tasks.  It is seeking consistency but realizing you are subject to the whims of this cruel disease and your symptoms can worsen in an instant, destroying the best-laid plans.  It is pushing yourself to the point of collapse and going without eating some days, though you know you should not, just to show this disease who is in control.  It is being endlessly asked if you are okay, listening patiently to well-meaning yet misguided souls offer “remedies” and unsolicited advice, kindly overlooking their pronouncements that you “just need to eat,” explaining the nature of “chronic” illness time and time again, and ceaselessly trying to convince those around you that you might never be “okay” again, not in the sense they imagine.  It is doing everything you are supposed to do – following the diet, exercising, resting, taking your medications, keeping your medical appointments – but still receiving no healing.  

It is multiple levels of worry and fear.  It is checking the menu in advance and wondering how it will look when you only order a drink.  It is searching for a bathroom as soon as you enter the building.  It is carrying emesis bags and a change of clothes in case of accidents.  It is reading the room to know how embarrassed you will be should such an incident occur.  It is checking your watch because after an hour or two you might not be well enough to drive yourself home.  It is worsening symptoms, comorbidities, and flares that grow longer and are more frequent.  It is scary-low blood pressure, poor lab markers, shaky footsteps, and mental confusion.  It is 500-calorie days, liquid diets, tube feedings, and TPN.  It is ER trips and hospital stays that leave you wondering how long you can survive this.  It is not knowing the cause and believing that doctors will never find it.  It is watching your GP friends struggle and sometimes die – and pondering whether you will be the next green candle on someone’s wall. 

It is disappointment and lowered expectations.  It is trying a food again and again, hoping against hope that this time you will be able to tolerate it, and then dealing with the pain of your mistake.  It is going to doctor after doctor, trying treatment after treatment, eagerly anticipating relief, only to have your dreams dashed when it makes no difference.  It is the look of dissatisfaction you see from your boss when you cannot complete an assignment, from your friends when you call to cancel, and from your family when you cannot do your fair share.  It is being unable to meet the demands placed upon you by yourself and others, though you wish with all your heart you could, as you once did.  It is watching your world shrink before your eyes as you constantly try to readjust.  

It is grief and loss.  It is knowing that despite your best efforts, you won’t make it to your job tomorrow, that you will miss your daughter’s play later this week, that the vacation you planned for next month will be put on hold, and that you will be absent from the family Christmas gathering again this year because you are unable to function.  It is wishing your friends would invite you over like they used to but knowing you have disappointed them one too many times.  It is yearning to share a meal with your family, just a simple meal, but being nauseated by the mere smell of food.  It is lying on the sofa on your anniversary instead of spending the evening out and then wondering why your spouse does not look at you quite the way he used to.  It is gazing into your child’s pleading eyes and for the millionth time saying, “I can’t.”  It is the loss of your career, your social life, your enjoyment of food, your spontaneity, your independence, your sense of security, your dignity, and your peace.  It is desperately wanting your old life back, longing to have just one more carefree, symptom-free, “normal” day like the ones you once took for granted. 

 

But Gastroparesis is more than this…

 

It is a teacher of compassion and empathy.  It opens our eyes and our hearts to the struggling souls who surround us who need to be heard and understood.  It demonstrates the depths of physical and emotional pain and makes us far more open and responsive to the similar needs of others.  It admonishes us that there are failures in our approach that must be addressed, that all lives are valuable and all people are deserving of dignity, and that the chronically ill are not merely statistics but living, breathing beings who still have hopes, dreams, and goals.  It develops in us sensitivity, understanding, and a sense of responsibility to those around us.  And it creates in us a desire to make it all better, to serve, to educate, to guide, to dedicate ourselves to easing the pain of others; it reveals meaning and purpose in an otherwise seemingly random world. 

It is a developer of appreciation.  It reminds us that we are not promised another day and that the people and things we once took for granted are precious.  We let go of grudges and embrace our loved ones without restraint because we have learned there is no “perfect time” to tell those who matter that they do.  We embrace the small, beautiful moments because they are so few now.  We pause, soak them in, feel them to the depths of our souls. We seize each second of joy and fully grasp the significance of what we once thought mundane.  It is the ordinary that is special, priceless, and it is sometimes only when we have lost this that we understand.

 It is an encourager of resilience, perseverance, strength of will, and determination.  For despite the vast hardships and obstacles before us, we daily overcome.  We wake, adjust and accommodate, and continue on, even when all seems bleak.  We face our sorrows and our fears, push the pain and fatigue to the far corners of our minds, dust ourselves off, and find paths forward.  We speak out and advocate for proper care and decent treatment for ourselves and others, and we fight for cures so that not one more precious soul must share this nightmare.  Day after day, we endure adversities we never dreamed we could, and we emerge stronger for having survived these trials.  We hold onto defiant hope, earned through fortitude and determination to alter our fates, and we endeavor to one day live the lives that were so brutally stolen from us, or in the absence of this, create new, meaningful lives borne out of this suffering.  We stubbornly refuse to relinquish our dreams and choose, instead, to excel in even the darkest of times. 

#ThisIsGP

Lilly

She enters in the midst of the storm,
Raging at the injustices of the day,

Too much homework, unwarranted grades,
“Who uses this stuff anyway?”

“Mom, they made her cry,” she begins,
“She was lonely, sad, and all alone,
No one seemed to notice or care,
So, I went over and asked her to join.”

In a flurry, singing songs of her day,
Babbling on, chattering feverishly and free,
Throwing hands up, arms swinging wildly,
She exuberantly brushes right beyond me.

She tells the tales of her woe,
Then speaks of moments of gladness and joy,
I try desperately to take it all in,
But I am helplessly, hopelessly slow.

The whirlwind gradually passes,
She is weary, exhausted, spent,
Up the stairs, she sleeps finally in peace,
Lovely spirit; she is indeed Heaven-sent.

Watch her slumber, though she is unaware,
As I recall fondly the long-ago years,
When she was younger and oh-so-innocent,
Close my eyes and battle back the tears.

I once held her closely, cradled in my arms,
And rocked her slowly while she slept,
Kissed her forehead, touched her toes,
A perfect angel I was meant to protect.

It is Christmas and we are driving,
He is freezing, abandoned to the street,
“We have to help him. He is starving,
Can’t we just give him enough to eat?”

Don’t have much, but we oblige,
And still, it is not enough,
Money is not the answer,
“Mom, he needs a hug.”

She stoops to accept and embrace him,
Tears glistening brightly in her eyes,
He is taken aback, astounded,
The look of wonder and surprise.

She lingers, reluctant to leave,
But we must end this – what more can we do?
She has a million questions, so disturbed,
I want to answer – how I wish I knew.

And still, this homeless man haunts her,
Though many years have gone by,
She revisits, relives this moment,
Never leaves her, no matter the time.

Skip my memory, fast-forward,
She is in the yard, saving worms,
It is raining, and “they will drown,”
So, she helps them, as she has once sworn.

She’s in the bathroom, getting ready,
“Daddy, please help the bug,”
“Mommy, don’t kill the spider,”
So compassionate and full of love.

Elementary, middle, and high schools,
Academics, sports, and clubs,
Bumps, and bruises, and heartaches,
Somewhere along the line, she grew up.

Becoming the person she’ll one day be,
Separate thoughts, different views all her own,
Branching out from the old and familiar,
Stepping away from the world she has known.

I marvel at her grace and her beauty,
As I help her get ready for her first prom,
I am anxious and nervous, feel I’m losing her,
“He’s nice, so please don’t worry, Mom.”

Her bicycle gathers dust in the garage,
It has now been replaced by a car,
I prepare for the day she will leave us,
As we assess colleges both near and far.

Where is my little one, my child?
It seems like a dream, all a blur,
The young woman now standing before me,
Tells me time has flown swiftly and sure.

I bend down and whisper I love her,
Begrudgingly go back to my bed,
Hate to leave her and pray she is safe,
That we have many good days left ahead.

Morning breaks and the tempest begins,
She’s in a hurry, a bustling gust of wind,
But I am shouting, crying, sick, and drained,
Wishing illness away, I am at my wit’s end.

Silent and unsure, she enters the room,
No solutions or wisdom, nothing to discuss,
She rubs my back and embraces my shoulders,
She is sufficient – in this moment, more than enough.

GRACE LONG-FORGOTTEN

You think yourself virtuous, faithful, and true,
Faultless, flawless, perfection,
A bastion of moral superiority and authority,
Spitting image of God’s own true reflection.

But who are you to denounce the fallen?
What gives you the right to judge?
Sentencing from your pristine ivory tower,
Stubbornly refusing to budge.

You’ve no right to pontificate and condescend,
To the sorrowful whose lives are so burdened,
By chance, by fate, by regret, and disappointment,
Those abandoned, cast out, and deserted.

For you see but a single moment in time,
A life shattered by cruel circumstance,
A being who might have been glorious, divine,
One which cannot be known by first glance.

From your safe, lofty perch, far above the fray,
You pronounce remedies and rain down your wisdom,
But your words fall hollow, shallow, and cold,
Upon the ears of the unenlightened unforgiven.

Your curses and condemnations steal their hopes,
And crumble their precarious self-esteem,
Weigh mightily on their troubled minds and souls,
Resign them to mediocrity, crush their dreams.

You cannot inspire through loathing and contempt,
Though in your callous shadow they may cower,
You only frighten, discourage, enslave, enrage,
Cannot lift them by virtue of your own power.

Come down from the top of your towering mountain,
Step out of your unyielding fortress,
Walk among the lowly, the simple, the unassuming,
And for their grievances, offer remedy, redress.

Encourage the faithless who helplessly struggle,
Those blinded by the harshness of life,
Offer succor, mercy, and sweet gentle comfort,
Show them the beauty of the Light.

For you were once where they find themselves,
But for the smallest, simplest twist of fate,
And by the grace of God – long-forgotten,
You were granted the narrow and straight.

You retain your position, your stronghold,
Atop a tenuous, temporal throne,
On the wind, at the whim of the Power on High,
Through no effort or real merit of your own.

You were chosen to minister, serve, and attend,
Called to help the impoverished and downtrodden,
Not to bask in the glory of your personal fame,
Nor be self-centered, narcissistic, and haughty.

So, humble yourself before your Maker above,
Before the masses, bow low your pride,
Open your heart and restore your soul,
See the world with newly-found eyes.

Embrace and enfold the long-suffering others,
Hold them gently just under your wing,
Offer soft, soothing tunes of forgiveness,
And together, we will learn how to sing.

WHAT YOU MEAN TO ME

Joy and heartache, triumph and despair,
Hard-fought battles and arduous trials,
No matter the tests or tribulations that come,
We face them all together, side-by-side.
 
Your gentleness and true affection,
Understanding and thoughtfulness,
Touch my once-callous heart, my troubled soul,
Leave me thankful, deeply humbled, profoundly blessed.
 
Though burdened with hardship and ailment,
My life still has purpose and meaning,
For I have found in you beautiful people,
A reason to try, to aspire, keep believing.
 
I have hope that we can usher in change,
That together, we can all make a difference,
That the world will open its blind, passive eyes,
And we will then see our splendid deliverance.
 
That the deaf will soon hear our passionate pleas,
For mercy, tenderness, and human kindness,
That we will promptly have a cure, or a measure of relief,
So we can rise – and leave this cruel illness behind us.
 
You are forever in my thoughts and my prayers,
Such precious, treasured, priceless souls,
My friends, my focus, my fondness, my devotion,
Worthy of effort, deserving of a voice.
 
So, I offer you my undying love song,
Pale and inadequate though it may be,
That you might know you are valued and cherished,
And understand how much you all mean to me.

HOME

The call in the middle of the night,

For which one is never prepared,

Unwelcome guests on the doorstep,

With heart-wrenching news to share.

 

We try to process the horror,

Sit in stunned silence, confused,

Cannot accept the certitude, the finality,

The mind rejects the mind-numbing truth.

 

Devastating, life-changing utterances,

Fall upon unprepared ears,

Words conveying brutal realities,

Our worst and suddenly confirmed fears.

 

Gone with no warning, in a moment,

Gone with no chance for goodbyes,

Gone while we all slept at peace,

Gone in the blink of an eye.

 

Agony and grief beyond compare,

Tears of sorrow now freely flow,

Devastation descends on our hearts,

Realization dawns ever so slow.

 

Try to make sense of the senseless,

But the nagging questions remain,

Did she struggle and did she suffer?

Was she aware and was she in pain?

 

Did she feel the love of her Savior,

In those last precious moments on earth,

Was she aware of His arms wrapped around her,

In death as they had been from birth?

 

Was she comforted by His sweet song,

When welcomed into the glorious light?

Did she feel the depths of His compassion,

While ushered out of this darkest of nights?

 

Did she know of His unknowable mercy,

Of His free and unmerited grace,

Comprehend His unfathomable love,

When she at last gazed upon His face?

 

And has she now found peace, so elusive?

We pray she knew how much we loved her,

We mourn, and we ache, and we weep,

Find comfort in the kindness of others.

 

This life is so fleeting, so brief,

A precious and glorious gift,

We are here and gone in an instant,

The days flowing onward and swift.

 

This world is not our final destination,

Not our hope, or our rest, or our home,

We were meant for another, our Maker,

And to Him we lovingly belong.

So, breathe in the beauty around you,

And cherish the ones you love,

Embrace them while they are still near you,

Hold tight to the memories when they are gone.

GASTROPARESIS AWARENESS MONTH 2020: #WarOnGP #GPRevolution

Six years ago, on Valentine’s Day 2014, I was diagnosed with Gastroparesis, and my life was, from that moment on, forever altered. Since diagnosis, I have endured much and have learned even more. I advocate because it saves me from despair and adds meaning and purpose to my life, despite the harsh effects of this cruel illness.

Over time, I have set many goals for myself and for this community, and chief among them is convincing my people how incredibly strong, skilled, able, and special they are. This is not an easy sell, since the world has convinced many of them to buy into the lie that chronic illness makes one weak and worthless.

But nothing could be further from the truth.

I have witnessed agony beyond compare in our GP groups, horror stories of neglect by friends, family, and the medical system; physical, mental, and emotional pain and abuse; career loss, financial bankruptcy, homelessness; hopelessness; and death. I have also witnessed unrivaled compassion, empathy, and spirit and am frequently awed by our members' generous gifts of time, information, advice, and encouragement to other members in need, all while they themselves struggle to get through the long, dark days. Time after time, they pick themselves up, dust themselves off, and find ways to survive, despite the difficulties.

Yet these feelings of worthlessness and inadequacy persist and are perhaps heightened because, despite our monumental efforts, we still have no cure. Last year, in an attempt to pass HR 3396, the Functional Gastrointestinal and Motility Research Enhancement Act of 2019 (a budget-neutral, nonpartisan bill that directs the NIH to expand and intensify its research and education efforts in regard to digestive disorders such as gastroparesis), at my urging and with a strong desire to unite for our cause, members of my Gastroparesis: Fighting for Change community sent hundreds of letters to their congressional representatives and made countless telephone calls urging these lawmakers to sign onto the bill.

In addition, in June of 2019, despite the physical and financial challenges, many of us traveled from throughout the nation to Washington, DC, for an unprecedented patient rally that highlighted our hardships, our need for proper medical care, our lack of research funding, and our desire to once again live “normal” lives. We gathered the day after that rally and (with the help of a disease-related nonprofit who assisted us in scheduling) met in person with our legislators on Capitol Hill. At home, in our individual states, those who could not travel with us hosted a virtual March on DC as well, and a few months later, we followed this up with a Virtual Advocacy Day, designed to sway our legislators to finally open their eyes to our plight and cosponsor our bill. We shared our stories, bared our souls, and put forth our best effort to make a difference for our gastroparesis community.

The result? To date, we have a whopping 22 cosponsors. Yes, that’s right… 22 out of our 435 House representatives deemed us worthy of help… 22.

Now a lesser group of people might have given up at this point, especially considering that in past years, with far less action and advocacy, the bill garnered nearly the same level of support. But is that what we did? No, because we are neither incapable nor apathetic. We regrouped, and a handful of volunteers researched and called the offices of those representatives who so blithely dismissed their own constituents, and we gathered the names and contact information of the health staffers of every single legislator who turned a deaf ear to our cries. And in less than one week, we sent follow-up letters to 185 congressional offices representing 349 constituents. That kind of effort and support from a community our size is unheard of.

Despite the daunting task and the overwhelming odds against us, we answered the call. And we will continue our efforts to educate legislators about our illness and inform them of our needs so that every man, woman, and child in our gastroparesis community can receive competent, compassionate care and so that we are granted much-needed research funding that tackles the causes of our illness, rather than merely symptom control, and which brings us cures rather than band-aids. We must have our lives back!

The current healthcare system has failed us, and the powers that be believe we should sit in silence while they “guide” us to our slaughter. But we are not helpless sheep, nor are we inept or unmotivated, and we vow to make the voices of the more than 5 million of us heard by everyone who impacts our care – our families and friends, the medical community, the researchers, our legislators, the media, and the general public. My friends are suffering and dying while the whole lot of “influencers” gain wealth and prestige at our expense, and we have had enough.

Make no mistake, we are in the midst of a War on GP, a GP Revolution as we like to call it, and we can take no prisoners. We are committed to meaningful change for our community. We can and will realize our goals.

Answer the call. Suit up!